How to Get Tested for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

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Artist: Zeraph Dylan Moore

There is no test that is officially-recognized to “prove” someone has ME or CFS. However, some doctors and patients find the tests on this page to be helpful. Please keep in mind that many people are not diagnosed based on testing. Many people are diagnosed based on symptoms and ruling out other conditions.

If you are applying for Social Security disability, please check out this page for a list of tests: How to Use the Social Security Ruling for Chronic Fatigue Syndrome

Cognitive Testing

Many people report that cognitive testing was helpful for documenting issues with memory, focus, concentration and cognitive function.

This may also be called Neuropsychiatric Testing or Neuropsyhological Testing or Neurocognitive Testing. Here’s the story of how Amaryllis Took a Cognitive Test. And here’s how Iris Took a Cognitive Test and here’s How to Find a Good Neuropsychologist (US)

Tilt Table Tests

A tilt table test is a test used to document changes in blood pressure and heart rate for patients with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. Some readers report that beta blockers or other medications can interfere with the test results. Here’s how Iris Took a Tilt Table Test

Some people who cannot get a tilt table test, instead try the NASA Lean Test (a “poor man’s tilt table test”). It does not require special equipment and any doctor can do it if they are willing. Some people have had success printing out the form and instructions, bringing it to their doctor, and requesting a special appointment to perform the test.

CPET

The CPET test is used by some people in disability claims. Sometimes this works out great, and sometimes people have regrets. There are two kinds of CPETS (one day and two day) and they are very different. Learn more about the pros and cons of the CPET.

The CPET test is often used by people applying for disability through their employer’s insurance. Here’s How Dahlia Used a CPET to win disability through her employer. And here’s How Iris Got a CPET. Lavender figured out a way to get many of the benefits of a CPET without all of the drawbacks: Lavender Solves the Problem of the CPET

Brain Scans

There are several different types of brain scans people have found helpful in documenting ME and related conditions: SPECT and xenon SPECT scans of the brain, MRI scans of the brain, PET scans of the brain and EEG/QEEG brain maps. The Hummingbird Foundation Testing for ME explains each of these tests. You can read the short explanations or the long explanations.

Blood work

There is no specific blood test that is universally recognized as accurately measuring CFS or ME. However, the links at the bottom of this page include blood tests and other types of medical tests that some patients and doctors have found helpful. EBV blood work is a common one.

Tests from the Social Security Ruling

The Social Security Ruling for Chronic Fatigue Syndrome includes a list of tests that can be helpful for applying for disability. These include some of the tests mentioned on this page, as well as sleep studies, EBV bloodwork, exercise stress tests, and several other tests.

In addition, the ruling recognizes “any other laboratory findings consistent with medically-accepted clinical practice.”  So, any of the other tests on this page also has the potential to be helpful. This ruling is for disability applications in the US. Most other references on this page are international.

Romberg Test

If you have problems with balance or disequilibrium, a The Romberg Test is a small, simple test your doctor can do in her office anytime. It may not give you a great deal of information, but if you are looking for more documentation on your condition, you can ask your doctor to do a Romberg test and to note the results in your records.

Related Conditions

If you think you may also have Lyme Disease, POTS, Fibromylagia or other conditions that are common in ME patients, please check out how to How to Collect Medical Evidence for Other Conditions


What Helps?

🌸 Which of these tests helped people the most? Cort Johnson from Health Rising asked 800 people this question. Here is their list of Which Tests Helped the Most (click on “View results” to see what everyone answered).


What If My Tests Come Back “Normal”?

🌸 You are not alone. Many people with CFS and ME test “normal” on standard medical tests. How Come My Lab Tests All Say Nothing is Wrong?


What If I Can’t Afford Tests?

🌸 In the US, check out How To Get On Medicaid Even if You Can’t Get On Medicaid and How to Get to the Doctor When You Can’t Afford the Doctor. There are also some resources for discounted lab tests here: How To Be Broke & Medicated


Lists of Tests

🌸 The ME Association has an excellent guide to Symptoms, Testing and Assessment for ME and CFS.

🌸 The Hummingbird Foundation website includes a: Short list of names of tests, plus a longer summary of each test, plus an even longer detailed explanation of each test.

🌸 The Myalgic Encephalomyelitis International Consensus Primer for Medical Practitioners includes a long list of tests. On page 10 there is a worksheet that can be filled out by a doctor. This booklet is written for doctors, so it’s going to be difficult for us normal folks like us to understand.

🌸 A lists of tests is available on the website for the Treatment Center for Chronic Fatigue Syndrome. They also publish a longer guide explaining tests in more detail.

🌸 The IACFSME published an ME/CFS Primer for Clinical Practitioners that includes a long helpful list of tests.

🌸 Katherine T Owen has compiled an excellent list and explanation of various Chronic Fatigue Syndrome tests on her blog Healing CFS/ME (keep scrolling down, the list is in the middle of the page). Includes special information on laboratory testing in the UK.

🌸 The ME/CFS Roadmap for Testing and Treatment was created by an ME/CFS patient. It includes excellent, detailed information on testing and interpretation of test results.

🌸 The Nightingale Research Foundation Definition of Myalgic Encephalomyelitis includes a list of tests for ME, plus tests for related conditions that occur in ME patients.


Updated Oct 2017. Please share your comments and suggestions below. Please let us know if any links on this page stop working. 

2 thoughts on “How to Get Tested for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome”

  1. Re: “No tests for CFS”

    Please obtain a copy of Osler’s Web by Hillary Johnson.
    Look on page 136, paragraph one.

    Like

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